I look in her eyes. They are still blue, still clear, and always searching. I look in her eyes trying to see past the eyes, trying to see inside her to better understand how she sees me, her family and the world around her. I try and see and understand what she sees and understands I want to know what her brain tells her about her life.
Before the strokes Marty‘s brain was a marvel. Her mind was quick, sharp, very deep and constantly moving and working. Marty’s working brain and her narration of its working was constant. She drove all of our conversations, she initiated most of our deep and shallow discussions, and she could literally fill the air with thoughts. Honestly, it could be exhausting trying to mentally keep pace with her.
For Marty, nothing was ever over, nothing was ever just right; no solution was perfect because she was constantly perfecting everything. For Marty the last word was hers, always. It could be painful and unproductive but Marty was always thinking and trying to find a better way. I find it completely remarkable that I miss that dynamic. I fell in love with Marty’s mind and her quick verbal skills and I have spent 30 years trying to get inside that amazing head and understand how her thinking drove her behavior and often times, my behavior.
The first stroke, the ruptured aneurysm, slowed her brain. Marty was no longer overt in her thinking, she was not proactive in conversation and she became completely reactive. I would watch her and see how she reacted and I think, for her, thinking, problem solving must have been like using a memory clogged computer, it works it’s just really slow and monumentally frustrating.
The change was real, markedly different and sad. I was stuck trying to initiate conversation and trying to carry discussions. There was a lot of unfortunate silence as I tried to step up to my new role. At the time I didn’t realize how much more there was to lose.
The 2nd stroke took a lot more of Marty’s brain and made it even harder to get inside her head and understand her and her perception of life. When we first came home Marty was so weak, so strained in her thinking it was painful to watch her try and verbally communicate; we eventually surrendered to a short-hand sign language to get a simple yes or no.
The brain, Marty’s, mine, yours is a remarkably resilient organ. Over time Marty found new neural pathways and is much better at talking and communicating. It is almost exclusively in a responsive manner, but it is talking and communicating nonetheless. Communication is still slow, it’s still stilted, it’s still completely reactive but her ability to talk with you, to you, has improved a lot, it’s like we defragged the computer but the hard drive is still really slow.
What I want from Marty is for her to be able to advocate for herself just a bit. I want to know if she’s hot or cold or hungry or thirsty. I want her to be able to help self-diagnose, to be able to say without my prompting, I don’t feel good and this is what doesn’t feel good.
Mostly I want to know if she feels secure, if she feels safe, if she feels some sense of contentment and happiness. Gone are the days when the woman who drove our lives and our discussions so much of the time. We can live with that, we can live with more silence in our lives; we can and will live with what we have. We have come so far and I am forever grateful for our life and where we are. Just once though I would like to really be able to see behind those clear blue eyes and know and really understand what it really feels like for Marty.